UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

If this has already been posted, I will delete:

The BPS (British Psychological Society) has sent out a consultation document asking for members' opinions on the ME/CFS DHSC interim delivery plan.

More info:

DHSC consultation on Improving the experiences of people with ME/CFS: interim delivery plan Deadline: 18 September 2023:

https://www.bps.org.uk/consultations-and-briefings

The Department for Health and Social Care has launched a consultation on Improving the experiences of people with ME/CFS: interim delivery plan

The consultation asks for views on specific chapters and actions on:

• research
• attitudes and education
• living with ME/CFS
• language used in relation to ME/CFS

The responses to this consultation will be used to help the DHSC to understand:

• how well the plan identifies and addresses the issues most important to the ME/CFS community, and
• where further action may be required

The BPS is intending to respond to this consultation, and we would welcome the views of our members to support us in doing so.

To share your views on any aspect of the consultation, please use either the accompanying form, or send your response in the body of an email, to hannah.randle@bps.org.uk.

Download a copy of the response form

( https://cms.bps.org.uk/sites/default/files/2023-08/Response Form - DHSC consultation on interim delivery plan on MECFS.docx )

[Deadline date redacted to mitigate potential confusion with the gov consultation deadline.]

Please include in your response any evidence you have supported by either your research or practice experience, or by your lived experience with ME/CFS.

As well as the response that the BPS is intending to submit to this consultation, we would encourage members with lived experience of ME/CFS to submit their own responses directly to the DHSC.

If you have any questions, or would like to discuss in further detail, please do not hesitate to get in touch.

​

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Edited to remove the date given by the BPS for the deadline for receipt of their members' feedback.

The date for BPS members' feedback is 18 September.
The date for feedback to the gov consultation is 4 October.
The date for feedback for the easy read version is 30 October.

 

I don't know. I've not seen a deadline of 4th October. The website notice and downloadable Response Form both say 18 September.

"by 9am on Monday 18th September."

 

If you go to this page, you can read previous responses, so imagine at some point this consultation response will be publicly posted, too.

https://www.bps.org.uk/consultation-responses

 

Their business interests are definitely involved here. Not surprising. It's the only stakes they have, but it is huge business for them, steady and zero effort.

 

Yes the deadline for the BPS responses in 18 September.
The deadline for the gov consultation is 4 October.

Where I've said "I've not seen a deadline of 4th October," I meant for the BPS call for responses.

 

"The consultation will run for a period of 8 weeks and is open to everyone aged 13 and over. You can respond as an individual or on behalf of an organisation."

Are any other organisations and bodies understood to be submitting responses?


Edited to add:

There is also another BPS notice here:

https://comms.bps.org.uk/6MRE-V4ZU-F3F2B7EE45E750623OI5HW88ECD4A55E540262/cr.aspx

 

https://comms.bps.org.uk/6MRE-V4ZU-F3F2B7EE45E750623OI5HW88ECD4A55E540262/cr.aspx

Member Update
| August 2023

Contribute to an open consultation

The society regularly contributes to consultations being carried out by government departments and other organisations, but we need your help to make sure that we can provide evidence-based psychological input across a variety of topics.

A number of consultations are currently open, including one from the Department for Health and Social Care (DHSC) on 'Improving the experiences of people with ME/CFS'.

This is an important consultation for people living with myalgic encephalomyelitis or chronic fatigue syndrome, and our response will help the DHSC to understand how well its plan identifies and address issues important to the ME/CFS community, and where further action may be required.

If you work in this area and feel your expertise would be relevant to the consultation, we'd love to hear from you before the deadline on 18 September* - more information is available on our website.

The society has also recently published a blog by the Law Commission's evidence in sexual offences prosecutions project team, which explores why BPS members' contributions are vital as part of their consultation on access, disclosure and admissibility of personal records.

You can see a full list of our open consultations on our consultations page.

Share your views with our open consultations

---------------------------

*The date for BPS members' feedback to be returned to BPS is 18 September.
The date for feedback to the gov consultation is 4 October.
The date for feedback for the easy read version is 30 October

 

From an email.

"Easy-read versions of the ME/CFS Interim Delivery Plan and Consultation are now available at the following link: https://www.gov.uk/government/consu...rove-the-lives-of-people-with-mecfs-easy-read

The easy-read consultation is open for 8 weeks, closing 30 October. We encourage people to complete the on-line response wherever possible but a PDF of the consultation document can be downloaded and completed offline.

The non-easy read consultation deadline remains 4 October"

 

Well, this is a crap explanation.
(Click to expand)

 

from the first page of the pdf linked to at https://www.gov.uk/government/consu...rove-the-lives-of-people-with-mecfs-easy-read

Not a good start; not how 'We' say it.

https://assets.publishing.service.g...data/file/1182389/ME-CFS-survey-easy-read.pdf

eta: sorry but do they think pwME have learning difficulties?

a lot of the photos are of people with Downs syndrome.

 

some of these photos are dreadful

 

who wrote this? it needs scrapping and writing again.

if this leaflet is an example then god help us.

 

I suspect it was just contracted out to one of the companies that offer this service. So done by an individua1 that knows nothing about ME/CFS and just uses stock photos from their 'easy read' 1ibrary and stock statements.

E.g. This type of company -

https://speakeasynow.org.uk/easy-read-service/

 

Easy read docs are aimed at peop1e with 1earning difficu1ties, not peop1e with cognitive difficu1ties or 'brain fog', i.e. they're not offering them to he1p the majority of PWME who may strugg1e with reading and absorbing norma1 text.

Edit. That said, this is a particu1ar1y appa11ing examp1e of a bad easy read document. I've seen far better ones, for examp1e the ones done as part of the Autism Strategy.

 

From the bottom of the document.

"This Easy Read booklet was produced by easy-read-online.co.uk
The booklet includes images licensed from Photosymbols & Shutterstock. "

 

Some people with Learning Disability/Difficulty’s do have M.E, themselves or in family so representation and access important.


Some people with M.E have English as a lesser used language and might struggle to understand the language in default document. Some people have not been given access to full literacy. So LD guides may be of some use for very basic interpretation for theses groups of persons also.